2011-2014. The original blog that got it all started. It represents reflections I had and sharing I did, during a time period in my life, freshly post autism diagnosis, worsening illness, though I wasn't yet clear on things. I was trying to process and going through a lot of hard learning. There's some good stuff in here, which helped others, and there's also some stuff that no longer reflects my situation and/or evolved insights. Please read with this in mind.

Thursday, September 25, 2014

Entry 19: List For Desired Changes

Entry 19: List For Desired Changes Oct. 5. 2012

Here is my list, for desired changes. It is
comprised based on my own personal experience with falling through the cracks
in a variety of ways in the public system, and seeing others fall too, due long
unrecognized Autism Spectrum and similar conditions.

Desired outcome: To gradually abolish the lack of
awareness with regards to the varying presentations of Autism Spectrum, in
varying public systems, by providing the most up to date information and
improving education.

A) Diagnosis and treatment.

1) Providing up to date information to potentially
referring GPs and Pediatricians, on the varying presentations of ASDs in all
children with all types of personalities, encouraging them to move away from
old information and old stereotyping; especially female children as the
presentations are more subtle, different and at times conflict with the current
DSM guidelines.

2) Providing up to date information for diagnosing
clinicians on the varying presentations of ASDs in all children and adults with
all types of personalities, and even amid comorbidity, again with paying
special attention to the different presentations in females.

3) Improving wait times on diagnostic services for
these children.

4) Encouraging clinicians to understand the
differences between ADD/ADHD and Autism, and how they often overlap, with
preference towards an ASD/Asperger’s’ diagnosis in which will result in more
support/funding.

5) An improvement on the behavioral/cognitive services
provided to those kids who, despite careful evaluation, still do not meet the
criteria for ASD and would therefore receive an ADD/ADHD diagnosis in order to
reduce the incidence of need to resort to medications such as Ritalin.

6) To increase awareness and education of how an
ASD may present in an adult, again paying careful attention to subtleties in
women, comorbid conditions, and encouraging education in order to intercept
over-adherence to old information and old stereotyping; in order to reduce the
incidence of that adult (who may be in desperate need for services) having to
seek and and pay for a private diagnosis (that they most likely cannot afford)
and/or be misdiagnosed/mislabeled with a mental health condition in which they
either do not have, or is masking the autism factor, and therefore fall through
the cracks on obtaining the rightful help, support, medical help and
employability.

**Also once/if the adult is diagnosed, to look into
ways of improving the accessibility and wait times of services that provide
support towards healthy functionality and ultimately employability.

My own personal experience with accessibility and
wait times was very difficult and required me as a young mother, already in a
state of physical illness and urgent need, to do all of the leg work in
accessing and relentlessly advocating for the service in which I am eligible
for. Once I accessed the service the wait time for the service to be
implemented was approximately seven months. Most of the friends I have, some
even with diagnosed Asperger Syndrome, were not even aware of this same program
in which they too could be eligible for and are struggling as a result. **

7) To increase awareness of the difference between
mental health issues presenting because of either a true psychiatric challenge,
or because of Autistic behavioral responses to reactive stress, or perhaps both
(affecting each other.) This could also extend to include ADD/ADHD and Post
Traumatic Stress Disorder.

8) Restricting the prescriptive authority of
psychotropic medication, especially by the way of a GP, in people presenting
with mental health challenges, until a more thorough evaluation is made as to
what the true cause of the symptoms are. The results of carelessly prescribing
medications without thorough evaluation do and have often resulted in
catastrophic and sometimes tragic outcomes for many people, especially in young
people.

B) Improved medical services for those with ASDs’
(this concept could extend to others with varying neurological and mental
health challenges) including educating doctors on how to communicate with and
treat people on the spectrum.

1)Increase
awareness/provide education about ASC for treating physicians in order for them
to better understand the fact that those with ASC are more prone to health
issues related to the digestive system, the nervous system and the metabolic
system, as well as to autoimmune disorders. Increase awareness that those with
ASD may have differences and/or troubles in communicating their symptoms,
reactions to medications and treatment preferences. This is needed due to those
with ASDs’ lack of ability to broaden their descriptions, anxious and other behavioral
reactions (different to the typical) to unpleasant and/or concerning symptoms,
and because of issues with Sensory Integration; which may cause the individual
to either feel their symptoms too little or too much. This can cause the
individual to fall through the cracks in addressing, diagnosing and treating a
serious medical condition; or in retrospect have the individual though of us a
melodramatic “hypochondriac” due to feeling a symptom as worse than it really
is, and therefore being taken less seriously in future concerns.

*Doctors should be aware of sensory integration
issues and the fact that autistics are more likely to react poorly, hyper
sensitively, adversely, and to experience the side effects of pharmaceutical
treatment. They should also have some general knowledge of right questions to
ask an autistic individual.

2) To include more accessibility to alternative
healthcare due to the fact that the A: the Alternative Healthcare Community
already has a lot more awareness of ASDs’, B: that autistic individuals may be,
and are often, on a very limited budget in which excludes the ability to afford
Alternative Healthcare, and C: that autistic people tend to respond much more
positively to Alternative healthcare treatments, and are as well more likely to
need it. E.g.: special diet guidance, digestive system support/treatment,
nervous system support, physio therapy, chiropractic, and specialized counseling
for emotional support.

D) My thoughts on the proposed DSM changes:

Either keep Asperger’s’ in the DSM or have it be so
that those who qualify for, or have, a diagnosis of Asperger’s’ would still
qualify to be placed on the Autism Spectrum. I feel this is crucial because
both kids and adults with Asperger’s’ are at a huge risk to fall through the
cracks if they lose their placement on the Autism Spectrum, by not receiving
the proper support and help.

The disabilities associated with Asperger’s’ are
relatively invisible yet still serious enough to require secured supports.
People with Asperger’s’ are especially misunderstood due to the invisible
nature of it, and therefore often experience the pressure of having unrealistic
expectations placed on them by an unaware society; this even results in the
individual his/herself taking on their own high expectations of themselves and
being very hard on themselves. Those with Asperger’s’ need not risk losing the
support for their often hidden varying neurological challenges. They also very
much need the emotional support of having to live with an invisible disability
while having social/communication challenges.

E) Public Awareness

I like the idea of increasing public awareness and
education, to try and abolish stereotyping and profiling, by way of using
(hopefully?) sponsored media ads on television and poster boards. Although the Internet
is great, even in ways other than the Internet as a lot of the older
generations do not have or use the Internet.

Adds could say things such as:

“Autism doesn’t have to look a certain way”,
“Autism can mean many different things for different people, everyone is
different, challenges and strengths are different” “Some people with Autism
struggle with communication but others can appear to be more articulate and
expressive; and their existing difficulties are more hidden” “women and girls
can also have autism”